Episode 3: Healthcare Transition Matters: A Parent Perspective

Introduction:  Welcome to the PIC/Family Voices Podcast, a space for families of children and youth with disabilities and special healthcare needs and the dedicated professionals who support them.  Join us as we dive into topics from early childhood and healthcare to education, behavioral health, and life after High school. Everything that shapes our shared experience.  Our mission is to equip you with the insights, resources and a supportive community to help you navigate this journey in ways that work for your, your family and the people you care about.

Jenn Pineo (00:34)

Welcome to Health Care Transition Matters. I’m Jenn Pineo, Project Coordinator and Lead Trainer at New Hampshire Family Voices. In this podcast, we will be focusing on healthcare transition. We will learn what healthcare transition is. We will hear from parents about their experiences in transition. And in future episodes, we will hear perspectives from youth and healthcare providers. Today I’m joined by Sylvia Pelletier the Director of New Hampshire Family Voices, and the Project Director of the Youth Health Care Transition Service Project. Welcome, Sylvia.

Sylvia Pelletier (01:11)

Thank you, Jen. I’m really excited about this series focused on healthcare transition.

Jenn Pineo (01:15)

So first of all, what is healthcare transition?

Sylvia Pelletier (01:17)

Care transition refers to a purposeful planned movement of adolescents and young adults from a pediatric or child-centered, to an adult-oriented healthcare system. The process involves planning and the transfer and integration into that adult-centered healthcare system. The goal of transition planning is to ensure that all youth have continuous access to the care they need, and that also youth or their caregivers are able to participate in that care as fully as possible. Now you may have heard that thought, what the heck does that mean? If we think just about the transition of care part, when a youth who receives care at a pediatric practice has to move on to an adult provider, there’s a lot that happens here. Families have to know, well, when does that happen? Is he or she gonna have to leave the practice at 18 or 21, 26, how long are they gonna keep you there? How does it happen? What’s the role of the pediatric practice in this happening?

Is somebody going to recommend a provider I go to? Are they going to share information about my child’s health with them? You know, are they going to help me set up the first appointment? All of those things are valid questions. This doesn’t even begin to address the bigger part, which is how a youth begins to learn about managing his or her own healthcare or learning how to navigate the system. By learning to navigate the system, this applies to whether they’re moving from a pediatric provider or not.

Jenn Pineo (02:29)

Why is it so important to address healthcare transition?

Sylvia Pelletier (02:31)

The bottom line is that good transitions improve health outcomes.  Right? Seamless, access to care is really important, and that’s particularly true for anyone who has a chronic health condition that needs ongoing care. But I think it’s really important that we recognize that this model of care changes for everybody. So regardless of whether there’s a change in providers, or whether or not a level of support is needed to manage those care needs, so preparing for those changes is really important.

Jenn Pineo (02:55)

So who works on health care transition?

Sylvia Pelletier (02:57)

You know, the focus on this work has really been on practices to do the work. Some elements really are focused at the practice level, such as having a transition policy that answers that question, like how long can my youth remain a patient in this practice? Or how is care gonna change when they turn 18 if they’re gonna stay in the family practice? In New Hampshire, a number of primary care practices have developed these policies that outline that. Some practices in New Hampshire are also engaging with youth directly by having them fill out transition readiness assessments. And these assessments really allow for the conversations to start about what skills are needed to manage health care needs.

More recently in New Hampshire, there have been efforts to expand who is working on transition with youth and families, really to make sure that these successful transitions occur. This is because parts of transition planning, such as gathering health information or improving youth or caregiver awareness of care needs, can be done by youth themselves or by their caregivers or other members of the child’s care team. And all of those things make sure that transition happens more smoothly. All of it doesn’t have to happen within the scope of a practice.

Jenn Pineo (04:02)

What are some of the challenges of challenges in healthcare transitions?

Sylvia Pelletier (04:04)

Providers, even before the pandemic, was that it was difficult to fully implement all of the recommended best practices within a busy clinic. We also have heard from families that it’s been difficult to find providers, particularly those willing to take on young adults with complex medical needs. know, ideally families have said they’d love to hear the provider they trust, who they know knows their young adult well, say, hey, go see “Doctor X”.

I know them and I trust them to take care of your child. We know that just doesn’t happen. We also hear from families that transition planning is sometimes overlooked when a change in practice isn’t occurring or if a caregiver is always going to be involved in the care of that youth. We hear from families and from community providers that youth are really busy and that this isn’t a priority for them. But we have youth who are really engaged in this work and they’re going to share their thoughts and tips on successful youth engagement in some future episodes.

Somewhat related to this, I think another one of the challenges is managing changing roles for both caregivers and youth. There isn’t always an awareness of this or a focus on it during transition planning. Early on, you know, the caregiver has all the information about the child’s health. They know the members of the care team. They know how to access them. Transition planning allows for this to shift during adolescence. Youth begin to learn more about their own health and ideally how to manage their own healthcare.

Caregivers begin to take more of a support role and a coaching role rather than a leading role in this effort. That said, for youth who will always require a level of support, the transition planning years are really about taking the time to identify what supports are needed and making sure that other caregivers have access to the information they need to support healthcare decision-making if the primary caregiver is suddenly unable to do so. But we hear this discussion also doesn’t happen as often as it should.

Jenn Pineo (05:50)

How are these challenges addressed?

Sylvia Pelletier (05:51)

In New Hampshire, efforts have been made to infuse healthcare transition into transition planning broadly. So leveraging connections between Title V healthcare coordinators and contracted work, such as the work being done by New Hampshire Family Voices through this Youth Healthcare Transition Services project and our youth advisory, the YEAH Council, and other entities as well who work on transition, such as those in education and area agency systems.

As just one example, the Bureau of Family-Centered Services has infused its transition planning into its healthcare coordination and its partners in health programs. In both of those programs, youth and families are engaged, starting at the age of 14, and the completion of readiness assessments, and then further developing goals around healthcare transition for their youth and family. And the Youth Healthcare Transition Services Project here at New Hampshire Family Voices provides guidance for those efforts.

Jenn Pineo (06:40)

Thank you, Sylvia, for sharing all of that information. Now we will be hearing from Donna Dunlop, who will be sharing her family’s experience in healthcare transition. Welcome, Donna.

Donna Dunlop (06:51)

I’m so glad that New Hampshire Family Voices is taking on this topic. Healthcare transition is so important and it’s complicated and scary and misunderstood as a part of our children’s lives. I’m happy to be part of this conversation.

Sylvia Pelletier (07:07)

Donna, what we’ve heard from youth and families is that despite recommended practices in the area of healthcare transition, family experiences are really still pretty variable. So I really appreciate your willingness to share yours with us today. First, can you tell us a little bit about your daughter?

Donna Dunlop (07:22)

Sure, Elena is a lovely 24-year-old with a-typical Rett syndrome. She has intractable epilepsy and a range of related challenges, so she really depends on us for all aspects of her daily life. And trust me, her list of doctors and medications is really eye-popping.

Sylvia Pelletier (07:43)

So I might imagine that with a large care team and a number of medications that healthcare transition could have been a little more complicated for your family.  Can you tell us a little bit about that experience?

Donna Dunlop (07:56)

Of course, as you can imagine, like other parents, we had become comfortable in the warm support of our pediatric practice. And we were really anxiety-ridden when we were told it was time to move on to the adult world. Even worse, when we asked if they have any recommendations of specific doctors who would be good as a partner with our family and with our daughter. We were told, all the doctors in the adult practice are good with no assistance given on facilitating the transition to a new set of relationships and personnel that might best meet the needs of our daughter.

Sylvia Pelletier (08:35)

So looking back, is there something that might have made this work better for your family?

Donna Dunlop (08:42)

Yeah, Elana’s early teens, we spent a lot of time developing a detailed care plan, which captured all med changes, doctor visits, notes, recommendations, surgeries, family details, and contact information. It was a really important summary of Elena’s medical profile. And that was maintained by Elena’s care coordinator in the pediatric practice and we were involved in the medical home project which was really important during those years also. And over time the practice ended its commitment to the medical home project and no longer maintained the care plan. When we transitioned to the adult practice I asked if our new practitioner could at least consult the old care plan and we were told that it no longer existed.

And it was just a tremendous loss. In hindsight, I wish that we could have at least been given a copy of the care plan. And I’d advise any parent to keep their own track of each med change and doctor’s visits, contact information, et cetera, even brief notes, because it’s very difficult to track medication history in the electronic medical record. I know we assumed that the electronic medical record would be able to easily capture all this and that we could look back in time easily to say, know, was she on this med or that med and when did she have this surgery? But in fact, it really is very difficult to negotiate.

Sylvia Pelletier (10:12)

I think that’s a really important reminder to families and something we don’t think about. think you’re right, we often make an assumption that a lot of that information is readily accessible. So a powerful reminder to us about the importance of keeping track of important information related to our children, our family members. What could members of Elena’s care team have done to help you during this time that you were making these transitions?

Donna Dunlop (10:33)

Well, maybe I’m being delusional, but I really thought at the time that it’d be great if there could have been a joint meeting between Elena’s pediatrician and the new adult provider. Short of a meeting, I hoped that it would have been possible for them to have a conversation about what Elena’s needs were and what issues that the adult provider should be aware of. But that really, you know, didn’t happen. We were told that that really wasn’t possible within the practice. Eventually, we connected with a care coordinator in the adult practice, and that made an enormous difference. And that care coordinator had actually known Elena in pediatrics, so she was familiar with our family and Elena’s background. So I could call her and know that I would hear back from her and the follow-up would happen.

We really depended on that, but when she retired, she wasn’t replaced. And that was a tremendous loss for us and for other families. And we can still reach out to the adult practice, especially through our patient portal, which really does work well and gets results, but there isn’t the same sense of connection. There isn’t a sense that there’s somebody there who knows our family and knows Elena and another contrast is that Elena’s pediatrician always spent some time during an appointment asking how our family was doing, what our psychic health was, and that really just doesn’t happen in the adult practice. There isn’t the sense in the adult world that the doc is looking at our whole family unit, and we miss that.

Sylvia Pelletier (12:18)

That point really speaks to another thing that we hear about in this discussion around healthcare transition about this adult model of care and what the expectations for what that care is going to feel like is quite different between pediatric and adult healthcare. And I think preparing folks for what that experience might be like is really important. What do you wish you had known or would you like other parents to know?

Donna Dunlop (12:41)

I think it would be useful for parents to know, sort of maybe have a welcome to the adult practice packet that would outline what families can expect in the adult world. And for instance, Elena had a GI doc when she was in pediatrics and we learned and we thought we would continue to see that same GI doc. And we learned that her adult provider would take care of her GI needs, and that was a surprise to us. And actually, you it’s nice that she does, but we didn’t know that that was the case. It also really amazes me that our practice isn’t equipped with any sort of lift system. So if I don’t have someone else with me on a visit who can help with a joint lift, it means that Elena has to be examined in her chair. And that is rarely a good idea. It’s really less than optimal.

Sylvia Pelletier (13:36)

Your experiences really echo what we’ve heard from other patients and families, really highlight the reason for the recommended practices of creating transition summaries and facilitating the warmer handoff you described, know, the conversations or joint visits, and so that families have an expectation of what to expect in the adult versus that pediatric model of care.

I thank you so much for sharing your experience and helping us to shine a light on the important work that remains to be done in this area.

Donna Dunlop (14:04)

My pleasure.

Jenn Pineo (14:05)

Thank you, Donna, for sharing that information. Now we’ll be hearing from Misty Martinez-Bohannon, who’s going to share her family’s experience in healthcare transition with us. Welcome, Misty.

Misty Martinez-Bohannon (14:17)

Thanks so much for having me here today.

Sylvia Pelletier (14:19)

But we’ve heard from youth and families is that despite a lot of recommended practices in the area of healthcare transition, families’ experiences are still pretty variable. You know, I really appreciate your willingness to share your experience with us today. First, can you tell us a little bit about your daughter?

Misty Martinez-Bohannon (14:34)

Abby’s currently 19 and is a super senior in high school. Our medical journey started when she was just eight days old with seizures. Today she lives with multiple chronic medical disorders which impact her daily and results in a large number of providers being on her care team.

Sylvia Pelletier (14:48)

I can imagine with a lot of members of her care team transition process has been complicated, you know, for Abby. Can you tell us what’s worked well so far for her?

Misty Martinez-Bohannon (14:56)

I’m really glad that we started her checking in for her appointments all by herself and going in to see the doctor for part of the appointment alone at an early age. I think we started that when she was about 14 or 15. I go in towards the end of the conversation so that there can be a wrap up about any particular items that might be important that I need to know about and to help Abby follow up on. This has been great because sometimes Abby has a hard time remembering all the information.

Sylvia Pelletier (15:21)

And I would imagine in addition to that, might help you as a parent to feel more comfortable, right?

Misty Martinez-Bohannon (15:23)

Definitely.

Sylvia Pelletier (15:24)

What has been a challenge in working on healthcare transition?

Misty Martinez-Bohannon (15:32)

It wasn’t easy learning to balance her independence with safety issues. I’m having a really hard time turning over control, like her medication management, because I’m worried about her taking that medication at a timely manner. This past year, we started really working on some transition goals, working on independence, et cetera, and we’re hit with another safety issue and everything came to kind of a halt as far as the transition goals. It felt like health care transition had to be put aside for now.

Sylvia Pelletier (16:00)

So I think you just really pointed out that it’s those concerns balancing her, her need for independence and your sense of for her safety is a challenge and that sometimes it doesn’t take priority, right? Healthcare transition, other things are going on with families. In hindsight, is there anything that could have made this better for you or for Abby as you were working on this?

Misty Martinez-Bohannon (16:21)

I definitely could have started this sooner.  I really, really have no excuse. I’ve been involved as a parent partner in transition projects and I still think we started late. I think it’s hard when you’re in the thick of things dealing with a day to day medical journey and you think you have all this time and you really do not.

Sylvia Pelletier (16:37)

So are there things that other members of her care team could have done to help? We hear from a lot of families that it feels like a lot of work on their part to do this, you know? So is there a way that other people could have helped you?

Misty Martinez-Bohannon (16:49)

I think that there is only so much time in appointments with care providers. Again, they’re dealing with so many things in a complicated chronic disorder patient that they run out of time too in the appointment to work on long-term goals like transition goals. The practices could have transition tools in appointment rooms, either posted or as handouts, so that people can peruse them when they’re waiting for the provider. I also wish that her transition process with her IEP had allowed more of a focus on building skills to manage her Medical care. It’s not a necessary life skill. It feels like a big missed opportunity

Sylvia Pelletier (17:21)

It does feel like there should be some more opportunities to bridge these skills and these goals into other realms. I think that’s an important thing for us to all be thinking about as we work with youth. Is there anything you wish you had known as her parents?

Misty Martinez-Bohannon (17:35)

It’s not something that you can just check off on a checklist and it’ll be over with when the family member turns 18 or 21, depending on when you decide to do this. This is a multi-step, multi-year process, especially when you’re dealing with concepts that might need repeated practice, tries, et cetera. Because a patient who has multiple disabilities might need a lot of time to learn how to take over their medical decisions and learn to make their own appointments and keep track of their own medicines and order their medicines and take their medicines on time and follow up with upcoming appointments and tests,

Sylvia Pelletier (18:09)

I think we know that for some families, you know, for all you’ve got level of independence can be different. So being thinking about what your youth is going to need and what they’re going to be able to take on and what support they might need is a really important thing for us to be making sure all families know and understand. So do you have a tip for something that you’d like other families who might be dealing with this to think about or to know?

Misty Martinez-Bohannon (18:30)

All of this really takes practice and it takes time. That is okay if you’re stuck on one of the steps in the transition process for a while, as your family needs more practice or you have to stop for a bit as their current medical needs are more important at that time. It’s not always easy to balance youth independence and need for support. Figuring out what support is needed and how to provide that support without overstepping. That although you never want to leave your pediatric providers and you’re nervous to even think about that.

It’s important to bring it up in your appointments and break down the process into many, many, mini multi-steps so that it is not as daunting all at once. And then if you’re taking one tiny step forward, you’re doing something and to celebrate that instead of worrying about all that you haven’t accomplished yet.

Sylvia Pelletier (19:14)

What a powerful reminder. think as moms, dads, sometimes we’re really good about saying, didn’t do this on the list. I think it’s really important to know that, you know, we’re doing something, you know, we’re making an effort to move our youth forward in managing their healthcare. And I appreciate you sharing that with us. Thank you, Misty. Thank you for time. Thank you for joining us today for this episode of Healthcare Transition Matters. Please tune in for future episodes to hear about what’s happening in New Hampshire and healthcare transition.

Conclusion (19:40)

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